Bloody Noses

[Guest guest]

Does anyone out there have problems with their CHARGEr getting bloody noses?

Peyton does not have his Choanal Atresia repaired so his left side is the only

one he can breath through and he gets bloody noses about once a day. I just

wondered if anyone else had this problem. I have tried Nose Ease which are drops

that are basically saline and some glycerin. I can only put them in at night

because he freaks out when he's awake. I can't imagine why he's nasally

defensive(NG tubes, suctioning,nose being wiped 50 times a day because of

constant drainage, etc.).

I bet there's not a CHARGEr out there who doesn't HATE to see someone coming

after their nose. I am dreading the day they want to repair his Choanal Atresia.

Wearing the stints and having to pass a suction cath through them does NOT sound

fun for me or Peyton. I'm thinking of just leaving it. His ENT said unless the

drainage bothers us there really isn't a huge rush to do it. Has anyone out

there just left their CHARGEr's noses?

Also, I a revert to the list(Iwas off for about the last 6-8 mos. during our

moving expidition) and I was wondering if there is someone on here who is near

St. Louis, MO. I know when I used to be on there was. Were going to be in St.

Louis for about 9 or 10 days in March for Peyton's open heart surgery that we

just found out he has to have.

I asked last week and no one replied, but I'll ask again. Has anyone had a

Sub-aortic stenosis repair? That is what Peyton has to have done. It sort of(the

problem) is an indirect result from his VSD repair. It can happen after an open

heart and if it can happen it will happen to Peyton.

Sorry for rambling!

Corrie Young

mom to Peyton(21/2)

[Guest guest]

For some reason my computer darkens the email field on every emails from

Furniture Mike Young. Does this happen to anyone else? Any

suggestions?

[Guest guest]

Hi Corrie,

My daughter doesn't have the bloody noses, but I did as a child. Just

like your son. Everyday. A couple of times a day, runs like water. It

got to be very frustrating for my mom and for me. She finally took me to

(I believe it was and ENT)doctor and he had to cauterize my nose over and

over for years. Nothing helped me. I had it worse in the summer time,

but any season I still got them. The only thing I did was let it run out

and after I thought there had already been enough blood coming out, I

would put my head back. Which most of the time when I did it that way,

it usually stopped about 5 minutes later. I know 5 min. feels like

forever when you head is facing up. I think I just grew out of it. The

doctors gave up on me. So my mom stopped taking me. I know doctors know

more now then back when I was a kid, so hopefully there is something they

can do. I know I'm not much help, but I thought I'd tell you what worked

for me. Hope they can do something for him. I know how he feels.

Korey mom to KK

___________________________________________________________________

You don't need to buy Internet access to use free Internet e-mail.

Get completely free e-mail from Juno at http://www.juno.com/getjuno.html

or call Juno at (800) 654-JUNO [654-5866]

[Guest guest]

Furniture Mike Young wrote:

>

> Does anyone out there have problems with their CHARGEr getting bloody

> noses? Peyton does not have his Choanal Atresia repaired so his left

> side is the only one he can breath through and he gets bloody noses

> about once a day. I just wondered if anyone else had this problem. I

> have tried Nose Ease which are drops that are basically saline and

> some glycerin. I can only put them in at night because he freaks out

> when he's awake. I can't imagine why he's nasally defensive(NG tubes,

> suctioning,nose being wiped 50 times a day because of constant

> drainage, etc.).

> I bet there's not a CHARGEr out there who doesn't HATE to see someone

> coming after their nose. I am dreading the day they want to repair his

> Choanal Atresia. Wearing the stints and having to pass a suction cath

> through them does NOT sound fun for me or Peyton. I'm thinking of just

> leaving it. His ENT said unless the drainage bothers us there really

> isn't a huge rush to do it. Has anyone out there just left their

> CHARGEr's noses?

> Also, I a revert to the list(Iwas off for about the last 6-8 mos.

> during our moving expidition) and I was wondering if there is someone

> on here who is near St. Louis, MO. I know when I used to be on there

> was. Were going to be in St. Louis for about 9 or 10 days in March for

> Peyton's open heart surgery that we just found out he has to have.

> I asked last week and no one replied, but I'll ask again. Has anyone

> had a Sub-aortic stenosis repair? That is what Peyton has to have

> done. It sort of(the problem) is an indirect result from his VSD

> repair. It can happen after an open heart and if it can happen it will

> happen to Peyton.

> Sorry for rambling!

>

> Corrie Young

> mom to Peyton(21/2)

Corrie,

MacKenzie has only a right side choanal atresia and our ENT says that

he would never repair unilateral choanal atresia at an early age. He

tells me the longer we wait to do it, the better it will work and the

less intrusive the surgery will be< when she's older he can do it

transnasal and avoid opening the roof of her mouth>. He gives me age 4

as an approximate age and says the only reason he'll do it at all is

aesthestics(sp)? I guess kids get made fun of when their nose runs all

the time. I personally think he's never lived with a kid that can't

breath at all when they have a cold, so it's easier said then done, but

ain't that always the case.

Oh yeah, nose bleeds. MacKenzie only seems to get them if her nose is

really irritated, from suctioning or very dry air< like in the

hospital>.

Jeanie Colp

mom to MacKenzie 9mos.CHARGE, Tyler 7, Zachary 4

Nova Scotia, Canada

[Guest guest]

>Does anyone out there have problems with their CHARGEr getting bloody noses?

Corrie, my CHARGER does not get bloody noses, but our son Seth, now 3 and a

half, and adopted from Guatemala gets some REAL GUSHERS. Last weekend he

had one that just kept opening up and each time it took at least 30 minutes

of pinching his nose before it would stop. Sunday night the rest of us ate

dinner while Tim and Seth sat in the living room, holding Seth's nose for

AN HOUR!!! He hasn't had any since then. This is what the docs have told

me. The repeated bloody nose is due to a blood vessel that is very close

to the surface on the inside of the nose. So especially in dry weather,

all it has to do is get a little too dry to open up and start bleeding

profusely. THey have told us to spray it with saline and us a q tip to put

vaseline up there. Usually, he doesn't have them. By the time he gets

them (every few months he will have a couple every day that are really hard

to stop) it is too late to try the spray, because spraying usually makes it

start bleeding again. It is really frustrating, and it is a LOT of blood,

and freaks Seth right out. He will not allow you to let go of the pinching

even for a second until he is sure it has stopped. Talk about a cramped

hand after an hour! I used to think he was picking his nose to make it

start, but oftentimes, it starts in the middle of the night while he is

sleeping and he just wakes up screaming and I come up and his face and

hands are soaked in blood. It is a scary sight. Good luck!

S. Hartshorne

.Hartshorne@...

[Guest guest]

KK,

Fortunately Peyton's are not as bad as what you and are going/went

through, but they are a nuisance. Thank you for the input!!

Re: Bloody Noses

>From: klbates2@...

>

>Hi Corrie,

>

>My daughter doesn't have the bloody noses, but I did as a child. Just

>like your son. Everyday. A couple of times a day, runs like water. It

>got to be very frustrating for my mom and for me. She finally took me to

>(I believe it was and ENT)doctor and he had to cauterize my nose over and

>over for years. Nothing helped me. I had it worse in the summer time,

>but any season I still got them. The only thing I did was let it run out

>and after I thought there had already been enough blood coming out, I

>would put my head back. Which most of the time when I did it that way,

>it usually stopped about 5 minutes later. I know 5 min. feels like

>forever when you head is facing up. I think I just grew out of it. The

>doctors gave up on me. So my mom stopped taking me. I know doctors know

>more now then back when I was a kid, so hopefully there is something they

>can do. I know I'm not much help, but I thought I'd tell you what worked

>for me. Hope they can do something for him. I know how he feels.

>

>Korey mom to KK

>___________________________________________________________________

>You don't need to buy Internet access to use free Internet e-mail.

>Get completely free e-mail from Juno at http://www.juno.com/getjuno.html

>or call Juno at (800) 654-JUNO [654-5866]

>

>------------------------------------------------------------------------

>New hobbies? New curiosities? New enthusiasms?

>http://www.onelist.com

>Sign up for a new email list today

>------------------------------------------------------------------------

>For information about the CHARGE Syndrome Foundation or to become a member

please contact marion@....

>